Diagnoses: Things People Think They Know

Must tell you that when I was diagnosed, and diagnosed and diagnosed, with a million degenerative diseases and conditions, it was over time and it still takes all the time I have to try understanding it all. Nothing that I have will kill me--yay for me!--but on some days, because of what is going on in my neck, arms and hands, I could wish to be dead. (Just realized that I never do wish for death, only relief! and death is not the picture in my head when wishing. I'm so cool.)

The thing is, I got used to what I have and work around it, and after several years, with different things flaring and simmering back down, I still occasionally read all about the different things and what are the new treatments. Still talk to my docs about them. Still have to see the docs way more than regular folk.

But it's funny how friends, family and acquaintances view me and others with disabling conditions. Many of them know somebody who has what I have, or had what I have, and they want to tell me all about the treatment. Many have just read something on the subject and want to tell me all about it. These people are quite well meaning, but it gets very tiring after a while, refraining from saying, "Shut up! You have no idea and are only making me feel like you think I'm stupid. Not helpful."

I've done it myself, especially when meeting someone who has similar conditions to mine. But I try to get only to the point where we are finding common understanding because of shared pain. Ten people can have the same diagnoses and those ten people will be affected in ten dramatically different ways. It is the way it is. The same treatments affect them differently as well.

I've told you that to tell you this:

Something a woman once said has stayed with me. She wrote a column for the paper where I was the weekend editor and she came with me to a Reiki treatment I was getting at the time as she was writing a story about it. She walked with a cane as she had some neuropathy in her foot. She said, "People are always asking me if I've tried this and that. But after all this time, I don't know that I would change it if I could. It has become part of who I am."

It's been 7 years for me and I really understand that now.

I don't know that anyone will ever truly understand what I have, that movement brings me pain and that I cannot live without movement. Conditions keep evolving. But it's OK now if I'm never understood. And it's unbelievable to me what I can endure; it puts so many other things in their proper places of not-so-important. I am now this person because of the last seven years. Chronic pain? So what.